Long Covid patients ‘travelling abroad for experimental blood-washing treatment’

Thousands of long-Covid sufferers are travelling abroad for unproven but costly “blood-washing” treatment, investigators have found.

Patients are travelling to private clinics in Cyprus, Germany and Switzerland for anti-clotting therapy as well as apheresis, a last-resort service that removes harmful, disease-forming proteins, chemicals or cells from blood.

Normally the treatment is used only in patients with lipid disorders that have not responded to drugs.

But experts warn there is “limited to no evidence” of the effectiveness of such invasive therapies, which could come with astronomical costs.

Long Covid sufferers typically feel extreme fatigue, muscle weakness, “brain fog”, breathing and sleep difficulties, memory problems, anxiety, chest pains and loss of smell or taste.

The World Health Organisation estimates that up to one in five people who have had the coronavirus continues to suffer symptoms for weeks or months afterwards.

Nearly two million people in the UK reported having the condition at the start of the month, latest data show.

But there is no standard treatment for it.

Apheresis involves needles being put into each arm to pass the blood over a filter, separating red blood cells from plasma. The plasma is also filtered before being recombined with the cells and put back into the body.

The treatment is based on some limited research that has suggested “microclots” in plasma could be linked to long Covid symptoms – but doctors say more studies are needed, and it’s not known whether microclots cause the condition or occur separately.

The investigation, by The BMJ and ITV News, found a private clinic in Cyprus that charged tens of thousands of pounds offered the blood treatment and advising people to buy hydroxychloroquine, a drug unproven to help sufferers.

Gitte Boumeester, a Dutch trainee psychiatrist whose long Covid forced her give up work, paid more than €50,000 (£42,376) there for six rounds of apheresis – but her symptoms did not improve.

Ms Boumeester, who learnt of the “blood-washing” treatment from a Facebook group for patients, was asked to sign a consent form at the Long Covid Centre before undergoing apheresis, which lawyers and clinicians described as inadequate.

She received nine rounds of hyperbaric oxygen therapy, and an intravenous vitamin drip at the Poseidonia clinic, next door.

She was also advised to buy hydroxychloroquine as an early treatment in case she was reinfected with Covid-19, even though scientists say it is unlikely to help.

Shamil Haroon, clinical lecturer in primary care at the University of Birmingham and a researcher for a trial of long Covid therapies, said “experimental” treatments should be done only for clinical trials.

“It’s unsurprising that people who were previously highly functioning, who are now debilitated, can’t work, can’t financially support themselves, would seek treatments elsewhere,” he says.

“But people could potentially go bankrupt accessing these treatments, for which there is limited to no evidence of effectiveness.”

The cost of apheresis and travel is so high that patients are fundraising on websites such as GoFundMe.

Chris Witham, 45, a long Covid sufferer from Bournemouth who last year spent around £7,000 on the treatment, including travel and accommodation, in Germany, said: “I’d have sold my house and given it away to get better, without a second thought.”

Marcus Klotz, co-founder of the Long Covid Centre, told The BMJ: “We as a clinic do neither advertise, nor promote.

“We accept patients that have microcirculation issues and want to be treated…

“If a patient needs a prescription, it is individually assessed by our doctor or the patient is referred to other specialised doctors where needed.”

A spokesperson for the Poseidonia said treatments are “always based on medical and clinical evaluation by our doctors and clinical nutritionist, diagnosis via blood tests with lab follow-ups as per good medical practice.”

Robert Ariens, professor of vascular biology at the University of Leeds School of Medicine, said: “They [microclots] may be a biomarker for disease, but how do we know they are causal?

“If we don’t know the mechanisms by which microclots form and whether they are causative of disease, it seems premature to design a treatment to take microclots away, as both apheresis and triple anticoagulation are not without risks, the obvious one being bleeding,” he adds.